Pennsylvania: Living Their Whole Lives With HIV

From CDC National Prevention Information Network

October 4, 2010

Lafayette Sanders belongs to a relatively rare group of HIV/AIDS patients in the United States: He was perinatally infected by his mother. HIV was a death sentence at the time of Sander's birth, and he was not expected to live very long. Now 24, Sanders is a peer educator for iChoose2live, a Philadelphia-based youth program that encourages HIV awareness and career building.

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"My main goal is to get people to talk about HIV," said Sanders. "I want to destigmatize it."

Social worker Christine Ambrose directs the Adolescent Initiative at Children's Hospital of Philadelphia (CHoP). "Back in the day, it was about preparing families to lose their kids." Now the survivors are "living these incredible lives, but with a lot of barriers," like the loss of a parent or parents, adherence to strict drug regimens, grueling side effects from treatment, and lack acceptance by their peers.

All of these burdens can add up and create more, said John Krall, family services manager at CHoP's Special Immunology Clinic. "They're dealing with depression, mental illness, and obviously the physical challenges," he said.

Young children who learn they have HIV may reveal the fact to others without understanding that this may lead to stigma. Even so, Krall said, "it's probably better to [disclose] it before the teenage years. With the younger kids, it feels a little less murky than a teenager who's trying to deal with their identity and interest in sex."

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